God Is Good

God Is Good!

Our card this year says it all. 2016 has been quite the year for our family. In fact, 2016 has been the HARDEST year of my life. There's been lots of surprises, lots of research, lots of appointments, lots of decisions to make, lots of learning curves, lots of tears, lots of smiles, lots of life changes, lots of patience...and a whole lot of what I call "Adulting." It's been stressful and tiring. Needless to say, I'm happy to say goodbye to 2016 and to bring on a New Year! But just because this year has been HARD, doesn't mean that it has been BAD. Looking back, God has blessed us in many ways this year. If I had to choose the biggest blessing, it would have to be...Colton's health. When you research DS, you see that most babies are born with major heart defects that require surgery. Some babies have digestive issues that require surgery. The narrow nasal passages and ear canals cause fluid to back up, resulting in chronic ear infections and/or pneumonia/RSV. In Colton's first year of life, he never went to the NICU, he's never been hospitalized, he's never had surgery, and he's never even been on an antibiotic. The only thing he's needed is Reflux medicine. He's had a few colds, but he's been able to get over them on his own. He has been a picture of health. I'm not saying that will always be the case...I'm probably jinxing it right now. But I'm SO very thankful for his health this first year. I can't imagine doing what all we've done this year with a sick baby who's in and out of the hospital. There are a lot of families out there that have had to do that...and it breaks my heart for them. Thank you, God, for Colton's health. We realize what a blessing that is this year.

This year, I've had moments of weakness when I've said, "2016 has been the WORST year of my life!" But that's not true. That's just my stressed and tired self talking. I can't say that it's been the WORST because...2016 gave me Colton. My happy, sweet, beautiful baby Colton. I'm so excited that he's here to enjoy Christmas with us this year. He's one of my greatest gifts. When I see this picture, my heart just melts. Everything that I've done for him this year, I'd do again in a heartbeat. He is totally worth it! He completes our family!



Our family would like to wish you a Merry Christmas and a Happy New Year! Thank you for following our journey this year. Thank you for caring about our Colton. Thank you for wanting to learn more about Down Syndrome. Your love, support, and comments mean so much to us. We hope you will continue to follow our journey in 2017.

Peace out 2016! We're ready to make fun memories as a family of 4!



"Every good and perfect gift comes from above." James 1:17.

"Give thanks to the Lord, for He is good. His love endures forever." Psalm 136:1

Feeding Therapy

Two weeks ago, Colton started his Feeding Therapy. He goes twice a week for 30 minutes. Our first goal is to get Colton to drink from a straw cup. The best cup to start with is the Honey Bear straw cup.



The good thing about this cup is that you can squeeze it to push the liquid up the straw to help the baby get started. We let Colton taste the liquid and then squeeze his cheeks to encourage him to suck on the straw. By squeezing the liquid up the straw, he doesn't have to suck as hard to drink since his liquids are thickened to Stiff Honey. However, Colton does have a really strong suck and at his second feeding session, he was able to drink from the cup without us having to start it for him. Hooray!! Now, we do have to squeeze his cheeks to get him to start drinking from the straw, but he'll get there soon enough. We only need to use this straw cup to help him learn to drink from a straw, but we can transition to another straw cup as soon as he gets the hang of it.



Colton will only take a few sucks and then he stops. He doesn't drink a whole lot yet. We really need him to start drinking more so that we can start weening off of bottles. It may take us longer for that transition than it would for a typical baby. He also needs to start eating more solid foods so that he gets enough nutrition. Right now, he's mainly eating purees with some oatmeal or rice cereal.

Colton uses his tongue to suck like he would a bottle, which is normal for all babies. However, we want to transition him to sucking with his lips. We want his tongue to stay in his mouth, moving side to side. His therapist will put a puff in his cheek to see if he can find it with his tongue. Sometimes he does and sometimes he loses it. She will then reach in and move the puff so that he can feel it in his mouth. Colton still has a pretty sensitive Gag Reflex, but hopefully he'll get over that soon when he starts to get used to more solid food. She recommended using a carrot stick in his mouth because it would be pretty hard for him to get a bite off of it without any teeth (Yes, we still don't have ANY TEETH!!!!!). She let him explore with one today and would brush it along the outside of his gums. This should help with his gag reflex, as well as his tongue movement. We want his tongue to find the carrot stick so he can practice moving his tongue around in his mouth.

A common myth about children with DS is that their tongues are too big for their mouth...hence, the tongue thrusting and tongue hanging out of the mouth. That is not true. Babies are not born with their tongues hanging out of their mouth. It all has to do with low tone in the tongue and face. Aspirating and reflux can also happen because of low tone. We want Colton's tongue and face muscles to stay strong, along with his throat muscles. We're hoping that as his throat muscles strengthen, he'll stop aspirating so we don't have to thicken liquids anymore. We also want his tongue to stay strong for Speech.

At therapy, Colton practices eating different solids like Puffs, Graham crackers, or Mum Mum crackers. He gags pretty often, which makes me nervous, but his therapist is good about resetting his gag reflex by pushing his chin to his chest. He also practices eating from a spoon with different purees...some are cold or just room temperature. By using cold foods, he can feel it more inside of his mouth, enhancing the learning experience.



At the end of each session, she massages his cheeks and lips (she calls it stretching them out). He doesn't seem to mind it.



As we transition from bottles to cups and solids, I find myself anxious. I was comfortable with thickening formula and feeding Colton purees. Change is hard, especially when a learning curve is involved. Most babies just naturally transition, but with Colton, it's more difficult. I can't just give him milk or juice because it has to be thickened. I can't even give him Tylenol without adding it to food or a bottle because he can aspirate on it (which has happened and it scared me to death!). I just have to remind myself to be patient...he'll get there. He will learn to eat and swallow and eventually we won't have to thicken his liquids anymore. I'm thankful that I have a Feeding Therapist to help me.

Dear Younger Me

Dear Younger Me (1 year ago to be exact),

Right now, you're 9 months pregnant. All you know is that you're going to give birth to a baby boy in the month of January. You are excited and wonder what life will be like with two kids. Will the new baby eat well, sleep well, cry a lot, get ear infections, look like his brother...??? You have absolutely no idea what is about to come or how much your life is going to change. There's not even one ounce of you that expects anything to be "wrong" with your baby.

In a few weeks, you're going to go into labor in the middle of the night. By the time you make it to the hospital and into your room, you'll only wait 4 hours to meet him. Your delivery will be SO easy, pain-free after a fabulous epidural, and fast. They'll take that 6 lb 13 oz. baby boy with blonde hair and blue eyes over to check him out and clean him up...and you'll soon realize that things are taking longer than normal. You'll begin to worry...you'll wonder what's "wrong?" But you need to know that there's nothing "wrong" with your baby...he's just special. EXTRA special....because God decided to give him an EXTRA Chromosome.

You're gonna be in shock...you're gonna be scared...you're gonna be disappointed...you're gonna cry...you're gonna question God...you're gonna feel like your world is crumbling down.

But I'm here to tell you that you're gonna be OKAY! Wipe away those tears. Don't question God...TRUST God. You can do this! You were chosen to be Colton's Mama. You are exactly who he needs.

Yes, your life is going to change...but the greatest part is that YOU are going to change. You are going to learn just how strong you are. You are going to be forced to get out of your comfort zone and make new friends. You're going to meet so many new, incredible people. You're going to gain SO much knowledge. You're going to learn to be patient and to celebrate small victories. You're going to look at people through different eyes. You're going to grow in faith. You're going to be a better version of the "younger me."

In a year, you're going to rock a chubby, happy, blue-eyed baby boy to sleep...and your heart is going to burst with love. Your eyes will fill with tears because you feel guilty that you ever felt disappointed. Your beautiful baby boy will eat well, sleep well, cry very little, never have an ear infection, and look so much like his older brother. He will be EXTRA special. He will change your family from ordinary to EXTRA-ordinary. He will bring you a joy you've never known.

You have no idea how blessed you're about to be. "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight." Proverbs 3:5-6

With Love,

The Better Version of the "Younger Me"



I was inspired to write this because of the song by Mercy Me called Dear Younger Me.
If you haven't heard it, I encourage you to listen to it. I hear it on KLOVE all of the time.
I've added the lyrics of the song below...



Dear Younger Me

MercyMe

Dear younger me
Where do I start
If I could tell you everything that I have learned so far
Then you could be
One step ahead
Of all the painful memories still running thru my head
I wonder how much different things would be
Dear younger me,

Dear younger me
I cannot decide
Do I give some speech about how to get the most out of your life
Or do I go deep
And try to change
The choices that you’ll make cuz they’re choices that made me
Even though I love this crazy life
Sometimes I wish it was a smoother ride
Dear younger me, dear younger me

If I knew then what I know now
Condemnation would’ve had no power
My joy my pain would’ve never been my worth
If I knew then what I know now
Would’ve not been hard to figure out
What I would’ve changed if I had heard

Dear younger me
It’s not your fault
You were never meant to carry this beyond the cross
Dear younger me

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

Every mountain every valley
Thru each heartache you will see
Every moment brings you closer
To who you were meant to be
Dear younger me, dear younger me

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed